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Dementia in the mirror
Whos that in the mirror that i see
Is it you it cant be me
For she is old and i am young
The dance of dementia has begun
What is your name
Oh i should know
You said you new me long ago
Well long ago when i was me
I had adventures by the sea
Iwas a wife a friend a mother
We used to chat to one another
And now i sit here sipping tea
A knitted blanket on my knee My life is strange now
Ill agree
But somewhere there is still some me
Dont talk about me when im near
Undertand i live in fear
Hold my hand and speak me
Is that you it cant be me
Dementia with Lewy bodies
This is caused by clumps of protein that build up in the brain the clumps are called Lewy bodies
These clumps are also found in people suffering with Parkinson's they build up in an area of your brain that is responsible for thinking, your vision and your muscle movement. it is thought that these Proteins ( clumps) affect the signals between brain cells so that messages to different parts of your brain break down.
This is rare in people under the age of 65.
There is I'm afraid to say no cure at the moment for this Disease but there are medications that can help it will not stop the disease from worsening but may help the symptoms some of these are
Donepezil
Rivastigmine
Galantamine
These are called inhibitors and may help with confusion ,hallucinations and sleep.
Symptoms for this disease are usually gradual over several years and get worse as time goes on.
Symptoms
speech
slow movement
seeing and hearing things that aren't there
memory loss
tremors
confusion
fainting
difficulty swallowing
depression
sleep disturbance
Life expectancy from diagnosis is around 5-7 years
Peoples symptoms for this disease can switch on and off in seconds one minute they are hallucinating and the next they are back in the room.
Hallucinations are very real to the person they may hear sounds be able to smell, touch and of course visually see what is not there.
When i worked in a care home I witnessed 2 ladies sitting at the table both flicking ants of with there napkins somehow they where sharing the same hallucinations and it is very important when caring for someone that this is there reality.
Another time i stayed over at a ladies house and she talked to her husband all night he had died several years ago .
All night she was talking to him and begging me to make him a cup of tea in the end i did and very soon after she settled .
So as I always say
to care for someone with dementia you must step out of your reality and into there's and always remember to take time for your self the journey ahead is not an easy one.
Marina Barker
FRONTOTEMPORAL DEMENTIA
This is a rare form of Dementia caused by abnormal clumps of proteins developing in the brain cells
these normally develop in the front and sides of the brain these are the parts of the brain that control language ,behavior and the ability to organize or plan anything .
around 1 in 8 people who get this condition will have relatives also affected by the same condition.
Other names for this are
Picks disease
frontal dementia
semantic dementia primary progressive aphasia
Symptoms
Personality changes
acting inappropriately
selfishness
unsympathetic
neglecting personal hygiene
over eating
lack of motivation
Language problems forgetting words calling a dog a sheep etc.
other symptoms that may occur
stiff movements difficulty swallowing
incontinence
The following medications are sometimes given
Antidepressants
Antipsychotics rarely used but can help to control severely challenging behavior
There is much more information on the NHS WEBSITE
Marina Barker
HALLUCINATIONS
Hallucinations are due to changes in the brain more commonly seen in people suffering with
Dementia with Lewy bodies
Parkinsons disease Dementia
Vascular Dementia
Alzheimer's
What are the causes of Hallucinations' lots of things apparently
fever
infection
strokes
pneumonia
inflammation
not forgetting the dreaded Urinary infection
The person can see, smell, hear and even feel something they may see spiders one lady I cared for insisted there were snakes at her door and on another occasion I witnessed 2 ladies sitting at the dining table flicking there serviettes with great gusto ,when I finally managed to find out what was going on they both said there where ants all over the table is it possible to have a joint hallucination?
They may have conversations with people that are not there!
Not all hallucinations are disturbing to the person having them
It is a natural instinct to tell someone what they are seeing is not there
But in my opinion what they are seeing is as real as what we are seeing so who are we to argue.
Obviously if they are becoming violent because of what they're seeing that is a different kettle of fish and you need to seek medical help
Offer them reassurance
Speak calmly were quite safe
Hold their hand Make tea ,I always distract with tea everyone loves a cuppa
A well-lit room is good people often see things lurking where there are shadows
go for a walk
put on some gentle music
Most important don't argue with the person you will never get anywhere.
Marina Barker
For more information go to NHS website
At the beginning
When you are at the beginning of the Dementia journey you will no doubt feel overwhelmed ,angry ,frustrated ,frightened and hurt that your loved one has this horrible disease.
In my humble opinion gather as much knowledge as you possibly can .
Start to put things into place it can be a long and winding road and i have often seen people wait too long and end up running round like headless chickens and making themselves ill.
Sort out things like
Doctors/Medication
Prescription deliveries
The diagnosis and what to expect
power of attorney
Social workers
Risk assessments for trips and falls
What future care are you entitled to
Day centers in your area
Care Companys
Personal alarms
Local support groups
Most importantly time out for yourself you can't care for someone if you are physically and mentally exhausted
........
24 HOUR PERSONAL ALARM SYSTEM
Some support services
Dementia UK
Age concern
Alzheimer's Society
NHS
Teepa snow on YouTube
BOOKS
Where memories go
Still Alice
The language of kindness
Somebody I used to know
I hope some of this will help if only a little.
Marina Barker
SEPSIS
Adult Sepsis
This is a life threatening disease sometimes called Septicemia or blood poisoning
This happens when your immune system over reacts to an infection it will then start to damage your internal organs and body tissue .
Sepsis can be hard to spot as it is sometimes not unlike the flu .
You cant catch Sepsis from another person it is not there for contagious .
SYMPTOMS
slurred speech
diarrhoea
nausea
vomitting
confusion
extreme shivering
muscle pain
severe breathlessness
mottled or discolored skin skin
not passing urine
Sepsis needs treatment straight away so if you think some one you are caring for has it do not hesitate to ring the emergency services if not treated straight away a person may go into septic shock extremely dangerous as your organs will start to fail
you may then need to be put on a ventilator in intensive care and or surgery to remove infection.
you will be given antibiotics straight away and you may be in hospital for several weeks.
People do recover mostly from Sepsis but you can be left for months or even years with physical and emotional symptoms this is called
Post-Sepsis Syndrome
Symptoms feeling tired and weak
no appetite
ill more often than before mood swings
Anxiety
depression
nightmares
flashbacks
post traumatic stress disorder (PTSD)
For more information go to the NHS website
Please do call emergency services if you are not sure better to be safe than sorry
Marina Barker
Fatal Familial Insomnia
Fatal familial insomnia is a very rare genetic degenerative disorder it is caused by an abnormal variant in the protein gene
A person with this disorder will normally live between 12 to 18 months however it has been known for people to live for up to 7 years.
The onset of this disease normally occurs between the ages of 32-62 years although it has occurred in some people earlier on in life
this disease can present itself as dementia as the person becomes more and more confused
unfortunately there is no cure and there doesn't seem to be any treatment although it seems sleep medications are given and a drug called Klonopin to treat muscle spasms
Symptoms
trouble sleeping
vivid dreams
hallucination's can occur
trouble staying asleep
muscle twitching and spasms or Parkinson's kike symptoms
loss of appetite
deteriorating cognitive and mental function
speech problems
excessive sweating
swallowing
unexplained weight loss
fever
Marina Barker
Personality and Dementia
I have met 100s of people with Dementia and not one person is the same .
It stands to reason that as a persons memory is going and they are going back to a time when they were younger their personality will change to a certain extent .(If a person is suffering from TIAS this can indeed change ones personality )some of us are dancers some of us accountants, artists ,actors ,pilots the list goes on some of us have extremely strong personalities and like to socialize and others prefer their own company .Dementia does not randomly pick out certain people its across the board people with extremely high intelligence and people with no social skills at all.
As the disease takes hold and it destroys their memories remember them as you knew them and what they like to do if the person was a dancer then dance, I passionately believe its about the person and not the disease so lets all sing in the rain for as long as we can.
Marina Barker
CREUTSFELD-JAKOB DISEASE
Also known as CJD
This is a very rare disease it only affects around 2 in a million people a year in the united kingdom ,its caused by clumps of protein building up and makes the brain cell die .This leaves the brain cells like a sponge .
A person with this disease will have vision memory problems ,they will experience loss of balance and will find it harder to use there muscles as in walking or picking up a cup.
This disease usually takes a long time to develop so the symptoms may take longer to appear unfortunately once they do it is a rapid decline and the person will die within a year .
Types of CJD
Sporadic
this is the most common and seems to develop for no reason in people over 60
Familia
from inheriting faulty genes from a parent this can start from as young as 30 years old
Acquired CJD
This happens when you come into contact with an abnormal prion protein such as eating meat from an infected cow also known to us as mad cow disease.
These cases are extremely rare as measures were taken to remove infected animals from the food chain ,apparently there were 178 cases between 1970 and 2017 the average age of the people suffering from this was 26 years.
A diagnosis for CJD is difficult and may involve brain scans MRI
Samples of spinal fluid using a lumber puncture.
There is no cure for this it just involves the person being made as comfortable as possible.
Marina Barker
SUNDOWNING
Sundowning is also known as late-day confusion and is a form of Alzheimer's and other related forms of dementia .
Sundowning is not a disease but a group of symptoms effecting the person living with dementia.
This normally occurs late afternoon and carries on into the night .
the person will become confused and angry and it always seems to be as daylight fades and in the middle stages of dementia .
Some scientists believe that your body clock is affected by dementia and the part of your brain that recognizes when your asleep and when your awake breaks down.
These are a few things that might help
Avoid stimulant's
Alcohol
Coffee
Nicotine
Sweets and chocolate
Try to keep outings and appointments earlier in the day
Close the curtains and turn the lights out in the evening .
Make afternoons quite and calm .
Limit food intake in the evening to a snack rather than a hefty meal .
CHRONIC TRAUMATIC ENCEPHALOPATHY
Dementia pugilistica punch drunk syndrome
This is a neurodegenerative disease caused by repeated head injuries,
such as constant blows to the head and or repeated concussion .
this used to be called punch drunk syndrome or dementia pugilistica it is very common in boxers .
the disease usually begins several years after repeated blow to the head.
Symptoms
Changes in mood
Difficulty thinking (cognitive impairment )
Impulsive behavior
Short term memory loss
as the disease progresses ,slurred speech (dysarthria)
Significant memory loss
Parkinsonism symptoms
Difficulty swallowing (dysphagia)
there is no cure
This diagnosis will be treated with pain management and behavioral therapy to help with mood swings ,difficulty planning and carrying out tasks which will affect daily living as in personal care ,social interaction and general wellbeing.
The seven stages of Dementia
1
no impairment
everyone starts at stage 1 there are no symptoms of impairment and functions are normal
2
very mild cognitive decline
this can vary between age related problems that most seniors face such as forgetting things (dates,places ect.)
some of the signs of this stage
forgetting everyday phrases
forgetting things like where you put your keys .
3
mild cognitive decline
this is where symptoms for dementia or Alzheimer's can be come more apparent to family and friends
it will not have a big impact on everyday life
you may notice
problems with complex tasks
memory loss, forgetfulness
diminished work performance
getting lost
difficulty driving
disorganization
4
Moderate cognitive decline
This is sometimes described as early onset Dementia or Alzheimer's
Symptons are more noticeable and the person concerned should be seeing a health professional
Symptoms may include
Social withdrawal
Moodiness
Non responsive
Trouble with tasks
Denial
5
Moderately severe cognitive decline
The person concerned is now likely to need help with everyday tasks such as washing and dressing
you may need a home carer
Symptoms can include
Confusion
Forgetfulness
Memory loss i.e. personal details
Reduced mental ability for problem solving .
6
Severe cognitive decline
Also known as middle stage Dementia or Alzheimer's
The person concerned will now need help with daily activities such as using the bathroom or eating
Symptoms may include
Difficulty sleeping
Increased paranoia
Delusions
Anxiety
Difficulty recognizing loved ones
7
Very severe cognitive decline
Described as late stage Dementia or Alzheimer's
The person concerned is now unable to care for themselves
They may lose the power to walk or speak
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SEMANTIC DEMENTIA
In the past it was believed that all dementia was the same this is not so only recently has it been that distinct disorders such as Semantic Dementia it is related to frontotemporal dementia it is a progressive loss of the ability to remember words ,faces and objects this is from the shrinkage of the temporal lobe in the brain.
the problem usually starts with words people will forget the names of things like calling milk water a dog a cat they may also have problems understanding what is said.
people also have difficulty recognizing faces of the people they see all the time
they will find it hard to recognize objects.
people might become self centered not bothering about other peoples feelings becoming preoccupied with certain activities having a fixed routine daily .
the person cannot change there behavior as it is due to the damage that is effecting there brain cells.
people will normally stay physically well but may become slower as the disease progresses.
this condition normally happens to people between 50 and 65 years of age .there is no cure but certain medication can help with the symptoms.
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WATER INTOXICATION
Also known as water poisoning
This is a disruption to the brain caused by drinking to much water.
This is very rare and whilst it might be very difficult to consume to much water it does happen and death can occur due to excessive intake of fluid .
Drinking to much water can increase the amount of water in the blood this can dilute the electrolytes, and especially sodium in the blood.
WHEN SODIUM FALLS BELOW 135 MILLMOLES PER LITRE DOCTORS REF TO IT AS HYPONATREMIA
This is very common in sports people or endurance training but it does occur in people with mental health issues .
On one occasion because an athlete was not properly rehydrated ,his sodium levels fell below130mm0l/1 he then developed
water on the brain this is known as hydrocephalus .
developed a hernia in his brain stem and this lead to his death .
Overhydration happens when someone drinks more than there kidneys can get rid of via urine .
A build up of fluid in the brain is called cerebral edema which can effect the brain stem leading to central nervous disfunction .
In severe cases this can lead to seizures ,brain damage and comas .
SYMPTOMS
Confusion disorientation
Nausea
Vomiting
double vision
difficulty breathing
muscle cramps
not being able to identify sensory information
in rare circumstances swelling of the brain which can be fatal.